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Reflections on My First Conference

Linda Boutin, HPEN Consumer, Regional Coordinator

In the summer of 1995, I heard the first rumors that the 1996 Annual Oley Consumer/Clinician Conference might be held in my hometown, San Diego, CA. For 10 years, I had avidly waited to read about the happenings at each conference and wished I could attend. Now it looked like it might finally be possible.

Over the next 12 months, I stayed in contact with my regional coordinator, Judy Peterson, who kept me up to date on developments. We rejoiced when the decision was final to schedule the conference for San Diego. I hoped to help out with the planning and prepare for the event, but my health took a turn for the worse. I spent the end of 1995 and the first three months of 1996 bouncing in and out of the hospital with complications from pseudo-obstruction. I wondered if I’d feel well enough to attend and enjoy the conference.

By June, things were looking up and I started an exercise program to rebuild my strength and stamina. It included walking, riding an exercise bike and lifting weights at the gym. I felt better physically and my anticipation grew as well.

What a pleasure it was walking into the Kona Kai resort on the day before the conference got underway. Just driving there lifted my spirits. The Kona Kai is located on a small peninsula called Shelter Island. Both the sky and the sea were a brilliant shade of azure blue. Sailboats plied through the gentle waves off the shore.

You couldn’t have asked for a more perfect setting.

On Wednesday, Judy invited me to come and meet the Oley staff and other regional coordinators. Instead of feeling lost amidst a sea of strangers, I felt at home among faces I’ve seen in photographs over the last 16 years of reading the LifelineLetter. More importantly, even if I didn’t recognize a face, I felt a kinship among people who shared many of the same experiences as me. There was a strong sense of camaraderie and an upbeat, positive attitude shared by the crowd of people.

Time lost all reality while I talked and shared experiences with everyone there. Hours passed like minutes and soon it was time to go home, hook up and get some rest before the conference started in earnest on Thursday. I closed my eyes thinking about the many new friends I’d met in just an afternoon.

On Thursday, I arrived early for the continental breakfast and more socializing. The awards ceremony and plenary session were scheduled for the morning. Meanwhile the exhibitors were busy setting up booths and preparing samples to share with the consumers during lunch time. I talked to people who I’d met the day before like old buddies, but I wanted a good seat for the morning session. As soon as the doors to the room were opened, I found a seat front and center to see everything as it happened.

A few minutes later, the most emotional moment came during the award ceremony when a tear-choked David Holder said to the audience, “When I think of you, I think of overcoming. When I see you, I think of over achievement. I just admire your spirit.” A pioneer in home health care, Holder underwrites the LifelineLetter Annual Award. Each award winner was then announced and introduced to the gathering. Their combined stories impressed me with the strength of the human spirit.

I remembered when Ken Rosenhek, the LifelineLetter Annual Award winner, visited me when I was a brand new TPNer at UCLA Medical Center in 1980. His winning smile and wonderful attitude gave me hope that I just might be able to live with this new lifestyle. In his acceptance speech, Ken said he didn’t know why he’d been singled out to receive the award, but to me there couldn’t have been a better choice. His visit and later chatting with him at support group meetings certainly helped smooth my transition onto parenteral nutrition.

The Plenary Session flew by with time running short for the question and answer section (see accompanying article for content). The Oley Foundation had arranged with the hotel to provide a hamburger or hot dog lunch on the patio near the conference rooms, so I meandered over there to get some lunch. After I ate, I made the rounds of the booths and found myself making a trip to the car to drop off bags full of brochures and samples. All the exhibitors went out of their way to answer any question I had.

Next I hurried off to the breakout sessions. I attended “The Mind and Body Connection” co-led by Elizabeth Tucker and Ivan Wachmann. They reaffirmed for me the many benefits in a holistic approach to health care. They stressed that illness is a small part of the whole person and quality of life is a function of attitude. I resolved to restart my meditation and prayer program ASAP.

The second breakout session I attended was led by Laura Ellis about “Oley and the HPEN Consumer: Our Quest for Quality.” This section was as well attended as the first. Laura asked for everyone to share their experiences with exhibitors and tell her what needs and issues needed to be communicated to the government and home-care companies.

By the end of this session it was 4:30 in the afternoon and all I wanted to see was a bed and pillow to lay my head down on. I missed the Oley Benefit Auction, but Friday morning I heard it was a rousing success and earned about $2000.

This day was as sunshiny and beautiful as the first two with a little less of a cool breeze blowing off the harbor. Friday’s Plenary Session covered three areas of special interest to me and I listened attentively to the information passed along. Even after over 20 years involvement with the health care profession, there’s always new things to learn. It amazes me.

After lunch, I facilitated a Motility Disorders breakout session with Dr. Jorge Vargas from UCLA Medical Center. It had been several years since I’d been to UCLA for treatment, but he remembered me just the same. It seemed at every turn I ran into people I knew or had worked with in the past.

It was wonderful to get caught up on the latest about pseudo-obstruction. Dr. Vargas also gave us a detailed and thorough explanation of intestinal transplants and why it is so often coupled with liver replacements. Some of the most interesting discussion came at the end of the section when everyone began comparing food cravings shared by people with motility disorders. It made me feel a bit less uncomfortable about the needs I have for salty and fatty foods.

The last of the breakout sessions I attended was “Using Your Gut” led by Annie Wilde of the Nutritional Restart Center. By this point I felt so tired that it was hard to sit and listen. Despite my fatigue, however, I still managed to learn a bit about gut fuels like glutamine. It gave me hope that some day I might be able to stimulate my digestive system enough to be free of intravenous hydration as well as parenteral nutrition again.

Nutrishare hosted a sunset harbor cruise Friday evening. But even though I’d picked up tickets and promised to talk to various people on the cruise, I simply couldn’t do it. There was also a volleyball game, but I couldn’t have served the ball if my life depended on it. I went home to rest up for the picnic on Saturday.

For years reading the newsletter, I’ve pondered over the Oley Foundation wrapping up their annual event with a picnic. There’s a certain irony to people with digestive disorders ending their biggest celebration of the year with a picnic. It particularly bothered me when I couldn’t eat. I’d argue with myself that there were plenty of spouses, family, friends, exhibitors and clinicians who could eat and that was reason enough for a picnic.

Thankfully this year I could eat, so I felt better about attending. But as I looked around me at the many tables set up on the warm sand, I realized that the picnic had very little to do with eating. Instead it had everything to do with solidifying new-found friendships, taking a minute to ask those last vital questions that there was no time for during the hectic days of the conference and spending time together.

People wandered from table to table talking and in all honesty many half-full plates landed in the trash cans. But as Joan Bishop and Don Young went about organizing one last volleyball match, I knew that not one minute of time or iota of energy had been wasted during the conference. You have to admire the strength of spirit in HPENers socializing over the very item, food, that has changed their whole lifestyle. I walked hand-in-hand with my husband, happy I’d made it to the picnic and through my first Oley conference. I only hope I can do it again next year!

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.